Pt. 3 In the Hospital
The days in the hospital were a blur. So much pain pain pain. They never got it under control & several times they didn't get meds to me on time (even when requested) so I had to play catch up. It was really hard to even roll side to side.
The food was a nightmare. So hard to deal with. The nutritionist was good. She would come up and help me figure out what I could eat. We would spend time going through the menu and set up the best possibilities. Then the food would come up. Random. The menu would be on it. But the food would be whatever. One day it was chicken [!!!] with my menu on it saying lacto/ovo vegetarian & no substitutions allowed. Another day it was an empty plate. Eliot did his best to supplement.
The fragrance thing was a NIGHTMARE!!! On the door there were 2 signs. One said in big letters NO PERFUME or SCENTS or SOLVENTS. SEVERE ASTHMA. A secondary one was more complex below it...I'll put up an image of it later. My fave line I came up with was "Patient is not a Fragrance Crash Test Dummy. Don't just 'come in and see if it affects her'!"
I had an amazing amount of visitors which was really sweet. They of course got to experience some of the stress. Fly came out on the LIRR to visit. My friend Tim came from Boston to visit. Rhonda & her girlfriend Kathleen were in town from LA and came out to visit. It was awesome to have the distraction of people coming to hang out.
Mom & Dad sent great flowers & Rhonda & Kathleen brought a gorgeous bromeliad and a cool monster hand puppet. I definitely prefer not being in ICU cuz no one can get to you when you are in ICU.
A couple of days I had a roommate who was another Chiari patient Theresa. That was nice too. Having people around that understand what you are going thru is always a good break. Other chiari peops came to visit her so we all had things to talk about.
Mostly I was on the nod. One of the medications they had me on was a liquid morphine. It wasn't doing it at the every 3 hour dose. I ended up having to get a morphine injection for breakthrough and I was using it every time I could and still only getting down to about a 6. They said I had to stop the injection to get out of the hospital and basically insisted I just stop using it even though I wasn't having good pain control cuz they were tired of trying to deal with the fragrance thing. They wouldn't have to 'get tired of it' if they were like any other regular hospital and had a NO FRAGRANCE rule. It shocks me that there are still any hospitals left that allow staff to wear any fragrance AND on top of it provide fragranced hand sanitizer and soap. Just crazy.
And being a hospital, I of course got thrush & a UTI. mmmm. So rounds of nystatin & cipro were really great. Finally finished the nystatin today.
So finally on Monday, 6 days after I was checked in, even though I'd not really seen the physical therapist to get a handle on how to deal with myself out of the hospital and without really having my pain under control and without really having had a functioning bowel happening, they signed me out of the hospital.
Predictably the first 24hours were hell, but in general I was happy to be out.